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Run to raise awareness for rare disease

Gainesville girl suffers from spinal muscular atrophy

POSTED: March 27, 2014 1:00 a.m.

A 5,000-meter “Run for Zyah” will be this Saturday in Gainesville to benefit the nonprofit organization, Families of Spinal Muscular Atrophy.

The race is being held in honor of Zyah Goss-Pittman, a 4-year-old Gainesville resident who suffers from the rare genetic disease.

“Zyah is a very special child,” said Stalena Pittman, Zyah’s mom. “She is wheelchair-bound and has a feeding tube. When she eats, she aspirates and gets pneumonia.”

The goal of the 5K is to not only raise funds for Families of Spinal Muscular Atrophy, but to raise awareness of the disease. As far as Pittman knows, Zyah is the only person in Gainesville who has SMA.

“We want to raise awareness and let people know how special she is,” Pittman said. “She loves bubbles, princesses and SpongeBob. She is just a happy little girl.”

When she was 15 months old, Zyah came down with a case of pneumonia that eventually led to a collapsed lung. She was hospitalized at Children’s Healthcare of Atlanta, and after some genetic tests, she was diagnosed with SMA. The disease causes the patient’s muscles to become weak, which can prevent the child from breathing, crawling, walking and swallowing correctly, according to the Families of Spinal Muscular Atrophy website www.fsma.org.

Zyah has undergone four surgeries and six bronchoscope procedures to remove fluid from her lungs. Using a special machine that simulates a cough, Pittman removes saliva and mucus from Zyah’s airways every day because she isn’t strong enough to cough on her own. A common cold can put Zyah in the hospital for weeks.

“It is hard for any parent,” she said. “You question why. But I’ve been blessed with a great job that lets me off when I need to be off, and I have wonderful friends and family that help out.”

The race begins at 8 a.m. Saturday after the 7 a.m. registration at the American Legion at 2343 Riverside Drive in Gainesville. Registration is $28 before the day of the event and $30 on race day.

For more information or to register, visit www.sma5k.com.


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